“Top Chef”'s Dan Jacobs Opens Up About His Rare Disease: 'It Was the Best of the Worst Possibilities' (Exclusive)

The season 21 competitor — a newly minted James Beard Award nominee — has a lot on his plate, but he's filled with gratitude for the attention 'Top Chef' is giving his city and his story

When cheftestants ran to grab hops for a recent Quickfire challenge on Top Chef Wisconsin, fans might have noticed that Dan Jacobs didn't join them. Instead, the season 21 contestant strategically walked to his station to put his knives down and waited for the chaos to clear.

"I'm willing to sacrifice choosing first so that I can get a better position in the kitchen to be able to move around," Jacobs, 46, tells PEOPLE. "It's a daily challenge to do simple things."

The Milwaukee cook has Kennedy's disease, a fact he shared with his fellow contestants following the elimination challenge in week two. Diagnosed six years ago, he struggles with fatigue and mobility, but sees Top Chef as a chance to not only prove himself as a talented chef, but as someone who can rule the competition despite the physical limitations that Kennedy's brings.

The Kennedy's Disease Association (KDA) describes the condition as "a progressive neuro-muscular disease which causes muscle weakness and wasting (atrophy) throughout the body."

For Jacobs, it makes tasks like walking up the stairs, putting on shoes or fastening buttons particularly difficult and often painful. "But my brain is sharp and I've been doing this a long time," he shares. "I've learned workarounds, knowing what I can and can't get away with."

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When he first began experiencing symptoms in 2016, "I knew something was wrong but I didn't know what it was," he shares. His sister-in-law happened to be starting a neurology residency at the University of Chicago, so he traveled there in search of answers. "It was one of the most uncomfortable things you could possibly imagine," he recalls of tests which involved doctors sticking a needle into various muscle groups before giving them an electroshock. "But you could see something was definitely wrong."

The disease can often be confused for ALS or Parkinson's. So for Jacobs, when he was diagnosed with Kennedy's, "It was the best of the worst possibilities," he says. "It's funny to think you win a lottery with that, but in the grand scheme of things, I'll probably have a normal life expectancy. But the battles on a daily basis are real."

His younger brother Mike — a brewmaster at Chicago's Goose Island Brewery — also has Kennedy's, but has completely different symptoms.

"He can still run marathons and do physical things I can't even imagine doing right now," Jacobs says. "And it's frustrating, but it's not, you know? I'm proud of him in other ways and I don't ever want him to feel bad about things I can't do. It just is what it is."

Jacobs hardly lets his struggles be known on Top Chef. There were just a few instances that he needed help with a fine motor activity on the last few episodes. (At home, his wife of 15 years, Kate, helps him out.) Behind the scenes is a different story. "In between challenges, I use a cane," he says. "I wore braces on both of my knees. It was really difficult."

And yet, he carries on with grace. "I'm pretty terrible at being told that I can't do something," he says with a laugh. "I love restaurants, I love hospitality, I love cooking. I want to be involved in some facet forever."

Jacobs co-owns two restaurants in Milwaukee — the Asian-influenced Dandan and the fine dining spot EsterEv — and this year was nominated for a James Beard Award for Best Chef: Midwest, alongside his fellow chef and business partner Dan Van Rite.

"I've moved toward a role where I'm more of a mentor to our teams more than I am the one physically doing a lot of the work," he explains. "I spend Sundays basically just trying to chill as much as possible because I am just exhausted by the end of three straight 14-hour days."

Related: Top Chef Winners: Where Are They Now?

"It's really weird when you lose control; your ability to do the thing that you love and you know," he adds. "You could sit there and dwell on it and be sad about it, or you can just try and push as far and as much as you can to really show yourself. And I think that's what I'm trying to do right now."

The opportunity to bring awareness to Kennedy's is a big one for Jacobs; prior to Top Chef, he'd already raised hundreds of thousands of dollars for the KDA and hopes his time on the show will bring that number higher.

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He's also happy to be representing his beloved state as the competition rolls through Wisconsin cities including Milwaukee and Madison and the picturesque region of Door County.

"I always say Milwaukee is so cool, we don't even know we're cool yet," he jokes. "I love the exposure we're going to get from Top Chef. There's so much gratitude that comes with being on something like this, to be able to show people just how great our region is, and how important."

While he can't speak much to his time on the show, other than to say "it's a new adventure every day," Jacobs says he's "so thankful to be put in this position and to have fun with it."

"I'm taking each day as it comes," he adds. "It's been a real fun journey so far and I'm excited for the future."

Top Chef airs Wednesday nights at 9 p.m. ET on Bravo.

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